Football fans often remember Santonio Holmes as the Most Valuable Player in Super Bowl XLVIII where the Pittsburgh Steelers wide receiver caught the game-winning touchdown.

But during the 8th annual Sickle Cell Anemia Symposium at Howard University last week Holmes took on a different role — father — as he and Howard President Wayne A.I. Frederick talked about coping with a debilitating disease that primarily affects African Americans, like Holmes’ son TJ.

“I learned that a kid with sickle cell anemia may not live to the age of 30 and I wanted to learn everything in my power to help him,” said Holmes, who was interviewed by Frederick at the end of a symposium where various speakers talked about the latest advances with a disease that the mortality rate has improved over the years.

According to the Centers for Disease Control and Prevention, the SCD mortality rate for 1999-2002 decreased by 68 percent  (95 percent confidence interval [CI] = 58 percent to 75 percent) at age 0 to 3 years, by 39 percent  (95 percent  CI = 16 percent to 56 percent ) at age 4 to 9 years, and by 24 percent  (95 percent  CI = −9 percent to 47 percent ) at age 10 to 14 years. For the most recent period studied, a significant (42 percent ) reduction in mortality at age 0 to 3 years was seen between 1995-1998 and 1999-2002, with essentially no reduction in SCD mortality at older ages.

In 2009, Holmes donated the $72,000 player’s share as a Super Bowl winner to the  Sickle Cell Disease Association of American and two years later he became involved with the Third and Long Foundation, named after the situation in a football game in which star wide receivers are often called upon to turn a critical into a big play, to help a non-profit group that helps children.

Santonio “TJ” Holmes III, began to suffer from symptoms of the disease at an early age. Then a blood test revealed that TJ had inherited the blood disorder, and would need to combat the disease through constant hospital visits and medical treatment.

The Third and Long Foundation works in partnership with local SCD organizations to provide grants that enable families to receive proper treatment and education. The foundation is dedicated to building awareness about the disease through programs, merchandise, and fundraising events. These endeavors support families and raise funding for research on SCD.

When Frederick asked Holmes, what has it been like taking care of his son, he said, “He had pains that were indescribable for a three-year-old. He had a blood transfusion at seven years old, two collapsed lungs and there are moments when you don’t know if he is going to make it.”

Frederick, who has the disease, echoed Holmes when he described what he has experienced as a life-long sickle cell patient. Growing up in the Caribbean, he said, he loved the water, but he quickly learned that swimming in saltwater wasn’t compatible with the disease and like others with the disease, he would experience a painful medical crisis several times a year.

He told Holmes that the pain in his extremities were so painful, “I used to ask my mother to amputate my legs. When I had a crisis it was extremely debilitating.”

Sickle cell’s toll on African American children helped spur the origin of the Sickle Anemia Center at Howard University. Dr. Roland B. Scott, a pediatrician and allergy expert, gained international prominence as an authority on sickle cell disease and was hailed as a champion in the fight against it. Scott was a driving force behind the Sickle Cell Anemia Control Act of 1971, which established comprehensive research and treatment centers around the country for the disease.

Because of the efforts of Scott and others, the federal government now spends about $45 million a year on sickle cell disease and sponsors the operation of 10 comprehensive treatment and research centers.

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Hamil R. Harris

Hamil Harris is an award-winning journalist who worked at the Washington Post from 1992 to 2016. During his tenure he wrote hundreds of stories about the people, government and faith communities in the...

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